March 8th 2019
Becoming what you’ve always hated: from truly important via big deal to the third Velcade-hot in the third cycle
Right. It is rather safe to establish that the chemotherapy is taking its toll. Completely against my will, the chemotherapy is now also definitely breaking down the good cells in my body, resulting in a huge exhaustion, without me having to do anything for that. The big advantage with this exhaustion in combination with the Thalidomide (Softenon) is that I’m sleeping like a rose. Just for what it’s worth. Downside to the exhaustion is, that whenever I’m trying to solve some Sudoku puzzles on my tablet, I tend to doze off sometimes. The irritating part is that the muscles in my arms also get weak, resulting in the stylo which I’m holding, to drop on the tablet and erasing, changing or manipulating otherwise every solution I came up with earlier. When I wake up and want to continue, I’ve asked myself regularly how I could come up with some pretty stupid solutions. Well, now I know…..
Okay, after this confession, let’s go back to today. We are getting better and better in driving to and from Utrecht. Bianca will have 3200 km of road behind her after the sixteen Velcade-shots. Today she touched 2200 km, with me riding shotgun and looking in full admiration to the environment I normally cross while going to work, but without noticing it as I’m watching the road. Okay, I’m digressing….
This morning we first had an appointment with the female internist of Healing arts. Last Monday I had the second follow-up check regarding the Goblet Cell Carcinoid which was found by coincidence in July 2018 in my appendix. That follow-up consisted of an ultrasound of my intestine and I actually could read the results the same day on the website ‘my UMC’. The main conclusion of the radiologist was: no abnormalities in the liver. I did hear this earlier from the two people that examined me, but the doctor is the one with the final verdict. This was actually also the first encounter with the female internist, because I had the first follow-up in the hospital in my residence. We talked shortly about the whole charade. In other words: a Travelling Guide on how one goes from an Appendicitis via a Goblet Cell Carcinoid to AL Amyloidosis and Multiple Myeloma. So…. At the end of this whole story, the doc asks me if I still had any questions. “Ehh….yeah, only one. What are the results from last Monday’s follow-up?”. She had completely forgotten about that in all her enthusiasm. The look in her eyes when she realised this was worth a ton of gold. Of course we had a good laugh about it, after which she gave me a thorough explanation and the answer I hoped for. I know I can expect whatever I think is right, but I’m still not a doctor. Later on, Bianca and I talked about it and concluded that it’s actually strange to say. When my oncologist told me on August 27th 2018 that there were no metastases, I was King of the World. Today, after the second follow-up, everything is still on the good side regarding that Goblet Cell Carcinoid and to be honest, I couldn’t care less. Something bigger came in between…. On the other side it’s a fact that a worsening situation is the last thing I’m waiting for in my current state.
After this appointment with the female internist, we walked straight to the reception for the Velcade-shot. Imagery. I most probably have put an image in your head of two people hurrying through the corridors of the UMC to their next appointment. Stumbling would be a more appropriate description in this situation. I sometimes wonder who has to hold on to who. Me holding Bianca in order to avoid the appearance of being drunk, or Bianca me, because we are walking so bloody slowly, she might fall over. Anyway. I had an appointment at 1315hrs, but I was taken care of at 1210hrs. You all know by now that the Velcade-shot doesn’t take a huge amount of time and after being shot up, we walked via the pharmacy to our car. At 1450hrs we were home again. I really crashed on the couch and I noticed that the energy meter is in the deep red. What helps on such an occasion, is two friends visiting us and make me laugh more than once, and would you look at that, the meter is leaving the red. Not that it is in leafy green now, as orange is the maximum for now, but nevertheless. Energy transformed to Will to Fight. Cool!
In the meantime I do realise something else, and beware, I’m making a confession here! I’ve always looked with a bit of horror to people that were very ill, sitting in wheelchairs, on an IV, pale, bald and completely helpless. In short: truly ill people. Why? Because I have a hard time dealing with their suffering that I cannot take away. In a normal situation I would make some sick joke just to make them smile a bit (like ‘common, come along, keep up the pace’, or something along those lines) but it often seems that this doesn’t help if people are that ill. And this powerlessness translates itself into horror. I know you can all feel it coming…… I’m going to experience a huge lesson in humility the oncoming months…. And I sincerely hope that someone will say to me that I have to ‘come along and have to keep up the pace’. Actually, I already know who will do this :-) There is nothing so frustrating when noticing that, because you are ill, some people are putting you, unaware of what they say, in a corner called ‘terminal’. I usually let these remarks pass by before saying that this corner is a very busy corner. As everybody is standing there…. Anyway, what I want to say is that being ill doesn’t mean one loses his or her humour, or interests, or one can’t think straight anymore. The tempo is just different, but on the inside you’re still the same.. I still love my family, good food, half litres of beer, loads of humour, airplanes, reading, sports, etcetera. Some things are not allowed for now, but I enjoy those things that are. You really appreciate the so-called small thing and I sincerely hope I can hold on to that for a very long time. So that lesson in humility is something I deserve apparently and rest assure, the next time I will make that joke to the man or woman in the wheelchair. If the joke has to be about keeping up the pace, is open for discussion, but ignoring because it bothers me, is definitely wrong. And that was something I had to get off my chest!
Next Monday I’ll get the last Velcade-shot of this cycle and then ten days to go to the start of the last and final cycle.
To be continued….